There is an urgency, not necessarily shared by others, about changing how persons with severe acquired brain injury (sABI) are treated. This is not something that will be solved by a task force or a steering group planning a response to a proposal concerning the framework established …. you get my drift.

Each day that passes, sABI survivors are loosing one day of their life without the proper support. Each day that passes, family members are restricted in how they can help, by red tape, risk assessments (risk for the professionals, not the sABI survivors), and limitations imposed by ‘system’ regulations. Each day we don’t make progress in creating an alternative to the current neglect is a day lost for those magnificent young people.

Here is Pádraig holding his head up high in the bed for the hair dryer after a shower (the hand is there behind his head for ‘just in case’) and holding his leg up high in the air while sitting in his wheelchair. I tried to do both of these ‘exercises’ myself and found them both quite challenging.

Imagine that there are sABI survivors in nursing homes, nursing homes that don’t allow private, specialised physios access to sABI survivors, that don’t allow parents to do simple exercises with their family members, that don’t facilitate inclusion in appropriate social activities.

I don’t want to ramble on but we will create an alternative to these absolutely unbelievable conditions, an alternative that will allow sABI survivors and their families to live a decent without fear, without threats from anyone, and with tons of love, professional help, and a thoroughly positive outlook.

The sooner the better.

Still not heard back from the HSE, no reply to my queries and I don’t know why.

Just arrived back home from a half-day trip to the West. In the morning I thought I wouldn’t be able to drive because I was hardly able to walk. Which is when I decided to try it with pain killers and anti-inflammatories. They did the trick.

I managed to do a few things this afternoon and evening, all in one go.

The best of them all was my visit to Shane in Tuam and his father Joe. Joe and I had met at Croagh Patrick last year and then Joe joined us when we met with Minister Simon Harris. But I had never met Shane.

Meeting Shane was so good. I had read about his journey, his father had spoken to me about him, we had seen him on the telly – but meeting him was one of those moments in my life I will not forget. Ever. And a moment that re-enforced, if that was necessary, that we can never give up on what we started last year with the help of friends, the media, and politicians. Ever.

January is almost over and I still have not heard about a meeting date with the HSE to implement their mandate to establish the day centre An Saol proposed to them.

This needs to happen. This will happen. If it takes another campaign in February to bring home to them their obligation to do so – so it will. Although, it would be so, so infinitely better if we could celebrate a success rather than pointing our fingers to yet another failure.

Let’s put an end to failures. Let’s not tolerate ignorance, bias, sloppiness and alternative truths anymore. It’s up to us. Let’s make the health system great again. Let’s put the sick, the injured, and the most vulnerable people in our society first. Let’s return the power to the patients and their families, and take it away from dysfunctional, disjoint ‘systems’.

Can we do this? – Yes we can!

Do you ever get this feeling that you’ve had an incredibly busy day but didn’t get anything done?

I googled that question and found out that it’s quite a common problem. With simple solutions such as “cut your list of priorities” or “say ‘no’ more” or – and I really like these for their simplicity – “get website blocking” or ” scheduling apps”.

All of which might work if you work in Facebook, Google, AirBnB, LinkedIn, Twitter, eBay, SAP, Oracle or IBM.

I’ve been feeling like this for weeks now.

Partially because I spent most of my ‘free’ time, the time I did not spend with Pádraig, chasing other people who did not get back to me as they promised the would: builders, sales people, health professionals, civil servants and others.

Partially because I see less and less certainty and predictability in life – maybe that is gone forever.

Partially also – and here I will need to change – because I have to prioritise better.

Pádraig spend the afternoon with one of his sisters while we went to enjoy a wonderful Sunday lunch with friends we made when our children went to primary school – in a different world. When I got out of the car at their house I made a wrong move and hurt my back – a reminder, if that was necessary, of the need to take a little more care. Later in the evening, Pádraig had a visit from a friend who brought him a wonderful scarf from remote town in northern India where she had gone to visit a friend (who is also a friend of Pádraig’s). When I came down to the kitchen, they were sitting around the kitchen table with tea and chocolate biscuits, and Pádraig had a huge smile on his face!

Happy days.

It was brilliant and beautiful to see him enjoying the chat and the laughter – and contributing to our happiness about him being there with us, taking part in his own way in the craic.

My sister in-law – no-one I know has done more hiking than her – put together an info pack for the Dingle Way / Kerry Camino and the Camino Inglés which I have started to study.

Just thinking – maybe I’m getting loads of things done but in a different way, different things, not ticking off lists, not ‘delivering’ priority stuff?

Haven’t been ‘running’ for a while regularly but tried to pick it up again about a week or two ago. Just short, slow, easy runs maybe twice a week for starters. Back to four runs per week from Monday. If you start listening to what researchers say about physical activity and its benefits I think I’d be mad not to keep physically fit.

It’s like reverse smoking: while you’d be mad not to quit smoking knowing about the damage it does, you’d be equally mad not to take up physical exercise knowing about the benefits it brings.

So here I am, waiting for the endorphins to kick in, after my (short!) run, out of breath and sweating like a pig.

The ‘runners high’ has officially been confirmed by the Germans (who else I ask you?), by a Dr Boecker in the University of Bonn, to be precise. According to an article in the New York Times (some time ago), the limbic and prefrontal areas are not just activated when running but also when people are involved in romantic love affairs or, Dr Boeker said, “when you hear music that gives you a chill of euphoria, like Rachmaninoff’s Piano Concerto No. 3.” The greater the euphoria the runners reported, the more endorphins in their brain.

Unfortunately, neither today’s running nor listening to Rachmaninoff’s piano concerto no. 3 have had an effect anywhere similar to that of a romantic love affair.

I’ll keep running.

I like Saturday mornings with Pádraig. We are on our own, we have time, do what needs to be done at a very slow pace, listen to nice music, relax. I’m not a good talker or story teller, and I wish it was different because I think Pádraig would like to listen to good stories, find out what is going on, what I’m doing or thinking. But I like to think that there is communication without words, some kind or connection, unity that does not require talk.

Finally, here is a really funny 7 minute clip about Trump’s Inauguration, seen on YouTube by way more than 1 million people in just a day. Trump’s Inauguration: This Is Really Happening

There is this theory I have: look at things that work, are helpful, and create energy (and leave aside irritating, unhelpful, and paralysing stuff) and spend time with people who push positive change, are ambitious in a good way, are caring, and have high standards (avoiding people who tell you all about what is not possible, try to persuade you to accept the status quo, and have a ‘that-will-do’ attitude) then, bit by bit, life will get better because the good ‘stuff’ and the good ‘people’ will ‘outgrow’ the bad stuff and the bad people.

I think it’s a good approach to life and it helps you stay out of trouble. Focus on the good rather than taking on the bad.

Jesus would probably not have ended up on the cross had he staid out of trouble and had he not taken on the establishment.

On the other hand, would we have heard about his message of love had he not campaigned for what is right and taken on what is wrong, got into trouble?

Are there two approaches? One that keeps you out of trouble and another that lets you end up on the cross?

Do we have to choose between one and the other? Are they mutually exclusive?

Pádraig is doing well, getting a little bit better all the time, loads of exercises, good food, a bit of fresh air, happy carers. I wonder whether this is how life will continue.

“Bitte” is the ‘magic word’ in German.

And we need some magic. While North Korea has ratified the UN Convention of the Rights of People with Disabilities, Ireland has not – remaining the only EU country not to have done so.

“Bitte” is one of these words you cannot translate into English out of context. It’s actually a great German word to learn because it means so many different things that you can use it in almost any context.

It can mean “please” (when you’re asking someone for something), “you’re welcome” (as a response to “thank you”), “here you go” (when you’re handing over an item to another person), “may I help you?” (for example if you are talking to a customer), “pardon?” (when you didn’t hear or didn’t understand something), “you are not serious!”  (when someone does something he shouldn’t be doing), …

But as with every other word, there comes a time when it’s of no use because it doesn’t get you anywhere, when its purpose can’t be achieved.

That’s the time you roll up your sleeves, spit into your hands, neither look left nor right but focus on the task on hand.

This is where I am. At the beginning. Of every day.

Rosenstolz, Du bist am Leben – not one of their most famous songs, but I really like the lyrics and the rhythm that makes me think of spinning around until I get dizzy…

Some decades (!) ago, Pat gave me a present of a CD (remember those tremendously expensive round shiny discs?) of the Brendan Voyage by Shaun Davey with Liam O’Flynn playing the most magical and enchanting pipes, re-counting the voyage of this most enterprising Irish monk who discovered America long before Columbus was even born.

We’re going to walk in the footsteps of St Brendan on our Camino to Santiago! Can you believe it???

Earlier this evening I had a conversation with a gentleman, a new friend, who is helping us to get our walk on the Camino to Santiago organised.

Not sure whether I mentioned this before, but just some weeks ago, the Cathedral of Santiago announced that it will award the “Compostela” to pilgrims who walk the 75 km of the Camino Inglés from A Coruña to Santiago AND the ‘missing’ 25km in their country of origin prior to arriving in Spain, as reported in some Spanish Newspapers.

While we would probably have had problems walking the last 100km with Pádraig in a week on the French Camino, I’d say 75km are doable. In addition, walking 25+ km here in Ireland before we do the longer leg in Spain will give us great practice and opportunity to ‘fix’ what needs to get fixed in relation to equipment. (And we might get a few Irish friend to join us!!!)

Here is where Kerry comes in and the idea our new friend had: It shouldn’t come as a surprise that the good people of Kerry already have a well signposted and supported ‘Kerry Camino‘ in place – where one can “walk in the footsteps of St. Brendan (the Irishman who ‘discovered’ America long before Columbus:) along the Dingle Way through 6,000 years of Irish History along the Wild Atlantic Way”, from Saint John’s Church in Tralee to the Church of Saint James in Dingle – from where many Irish pilgrims departed for A Coruña and on to Santiago de Compostela.

It’s all almost too good to be true (though we will most likely just walk the last 25 km of this way). And there’s a few (!) things that we will have to sort out – like new wheels for Pádraig’s wheelchair, some clothing, dates, routes, accommodation, ….  But nothing we couldn’t fix and then – we’ll be off on the Camino! Who would have thought….?

The new year is in full swing. Schools are back. Swimming Pools are open again. And Pádraig went for another session in the pool with his favourite swimming teachers. It was almost like the old days.

We interrupted Taoiseach Enda Kenny on the 9 o’clock RTÉ News tonight saying nothing for far too long about Brexit and watched last nights programme “We need to talk about Dad” on the RTÉ Player. A few people had asked us today whether we had watched it. I hadn’t. Basically, it’s about Brendan Courtney’s family trying to figure out what to do with their father who had suffered a stroke and had become dependent.

There is so much I’d like to say about this programme. About the ability of their father to speak, to eat, to drink, and to move at least part of his body. About the idea of possibly feeling guilty in the future if they didn’t care sufficiently for their father in the presence. About the ‘busy life’ Brendan and his siblings were leading, apparently preventing them to look after their father. About the mother and wife who said she couldn’t physically lift, move, and wash her husband. About the at times sloppy research and editing of the programme stating at some point that (towards the end) that he couldn’t understand that the State would make 2,300 euro or thereabouts available under the Fair Deal to pay for a nursing home, yet wouldn’t make the same amount available for home care. (Note that earlier in the programme the weekly cost of two nursing homes were quoted as 1,100 and 1,300 or thereabouts. Also note that home care packages delivering, for example, 56 hours per week at 22 euro per hour cost roughly the same as a nursing home – do not require the paper work of the Fair Deal and are paid for by the State.)

Earlier today, I helped a neighbour – he’s in his mid eighties, I think – to collect his wife of roughly the same age from a nursing home to bring her back home – after around three years of her having lived in unacceptable surroundings. He managed to get a home care package for her with carers coming in 4 times a day. Compared to our neighbour’s wife, Brendan’s father is really well. Yet our neighbour would not have it any other way but having his wife back home.

If ever there was a hero. Tonight, our neighbour is my hero. Talk about love. It’s right on our doorstep.

I hadn’t been with Pádraig and his carers at their second half of lunch time service for some time until today. So I don’t know whether this is something that happens every day or whether today was special. They had so much fun doing exercises with him in the wheelchair, trying to get him to move his toes, his feet and his legs. It was really really good. Even to watch. And they all had smiles on their faces!

What a difference that made!

Maurice Marechal, who founded the French satirical weekly ‘Le Canard Enchainé’ in 1916, once said that “my first reaction, when I see something scandalous, is indignation. My second reaction is to laugh. It’s more difficult but more effective”, according to an article in yesterday’s Irish Times by Lara Marlowe – and an article by Eleanor Beardsley WGBH News of 29 December 2016!

I’ve said that to many people: Take what doctors and other health care professionals have told us and other families out of context. Get the stage in the laughter lounge. A room full of slightly (or even heavily) intoxicated people. A white, bright spot light onto the stage. And tell those stories. We’d make a fortune. Up to now, I just thought the whole issue is too serious to laugh about it.

I’m beginning to think: maybe that’s the best way to deal with it!

Imagine.

There’s a man trying to get therapy for his partner and he’s pulled out of a van by the police with his arms twisted behind his back who are removing his partner and him from the only rehabilitation hospital in the country.

There’s a family with an sABI survivor – struggling with the demands of daily life – supporting the setting up of an organisation to organise therapies and a life for survivors of sABI and their families and a doctor says that is a waste of money.

A mother collecting money for her son, a survivor of sABI, and a doctor telling her to save that money and to go and have a good time on the Canaries instead.

An acute hospital ward where you have a nurse telling the husband of a patient, “Look, I’m in a bad mood today. You ask my brother what it is like when I’m in a bad mood. Better stay clear of me”.

There is a brain injured person on an acute ward, with nurses present, who is getting out of bed, tries to stand, moves back and forth like a tree in heavy wind, and eventually goes to the ground – when, far too late, all hell breaks loose.

There is a doctor telling families that secondary injuries and illnesses such as dropped feet are not important – they can be fixed at a later stage, when they could easily be avoided and, in any case, can’t always be fixed and often require an operation.

There is a young man being brought back to Ireland with a sABI to die, never sees a neurologist, looses all his teeth (“he’ll never eat again anyways”), and then, after 20 years starts to get better, starts to talk, starts to eat.

There is a lady fighting for her son’s rights and is being told that they’ll wear her down and that she’ll come back begging for help.

And the list of laughter lounge material goes on and on and on…. and these are only some of the details I’m aware of. And I am not working in health care.

Anyone who would like to contribute more stories?

Honestly. If you didn’t laugh about this, what would you do? Get desperate? Start a revolution? Get onto the Dreamboat? Ignore it? Work the ‘system’? Write to your members of parliament?

I think we should publicly talk about all of these stories and attitudes. Not in a bitter way. Not in a hurt way. Not from the perspective of a victim. But in an engaging, interesting, matter-of-fact, and – if that helps – a ‘funny’ way to engage people.

Not –
Picture yourself in a boat on a river
With tangerine trees and marmalade skies
Somebody calls you, you answer quite slowly
A girl with kaleidoscope eyes

But –
Picture yourself in a bed in a nursing home
With white boring walls and windows blocked up
Nobody calls you, they don’t come to help you
Your left with nowhere to go

You might just be left with: Lucy in the Sky with Diamonds.

Pádraig never stop to amaze me. He knows exactly what is going on around him. He understands what people are saying. He hears us saying things. He follows the news. He watches TV. But we have not managed yet to get him sufficiently involved. Telling us what he thinks about stuff regularly, as a matter of course. Something to work on…